The French Muscular Dystrophy Association (AFM) federates patients with neuromuscular diseases and their parents. Thanks in great part to donations from France’s annual Telethon, the AFM-Telethon has become a major player in biomedical research for rare diseases in France and worldwide. It currently funds about 37 clinical trials in different genetic diseases affecting the eye, blood, brain, immune system, and muscles… Thanks to its Genethon research lab, the AFM-Telethon stands out through its unique ability to produce and test its own gene-based medicines.

ABMM, the Belgian French-speaking Association Against Neuromuscular Diseases takes part in the fight by all means against neuromuscular diseases, promotes the well-being of affected people, increases awareness, provides medical equipment, sponsors scientific research selected by its Scientific Council, organises different interest groups, etc.  It was founded more than 30 years ago out of the desire of patients to take charge themselves of their future.
The association has close contacts with the Belgian federal authorities to improve the situation of people with disabilities in general and people with neuromuscular diseases in particular, in collaboration with its Dutch-speaking sister association Spierziekten Vlaanderen. The members of the Board of Directors are all volunteers directly affected by a neuromuscular disease.

FMM -Fondazione Malattie Miotoniche is a non profit foundation dedicated exclusively to Myotonic Dystrophies and non-dystrophic Myotonias.

Founded on 2011 in Milan, has 3 main missions: research on myotonic disorders, information about myotonic disorders and formation of people (doctors, scientists, nurses)about myotonic disorders.

Spierziekten, The Dutch Neuromuscular Disease Association

The Vereniging Spierziekten Nederland is an active and dynamic association of and for people with a neuromuscular disease. Its activities consist of providing information, organising mutual support and stimulating scientific research. Spierziekten favours international cooperation in the field of research and the development of therapies.

Spierziekten was founded in 1967 and now has approximately 9.000 members. More than 300 volunteers actively support the association’s activities. Spierziekten maintains a network of 10 regional groups and 15 national, diagnosis-bound support groups. These groups monitor international developments in the field of research, are involved in psychosocial care and provide information on technical appliances.

These groups inform their members on recent medical developments and initiate relevant research. They also publish brochures, leaflets and newsletters to inform the members.

Care
An important part of the Association’s initiatives concerns the improvement of social and medical care for people with neuromuscular diseases. Relevant experts closely cooperate with the Association to improve diagnostic procedures, rehabilitation and genetic counselling. Concentration of care in specialised centres improves the level of care. Current areas of attention are registration of patient data, development of medical protocols/standards of care, and technical appliances.

Information: materials, webcasts, meetings, conferences
Spierziekten publishes many booklets, brochures and leaflets. They mostly concern diagnosis-specific information but also inform on general subjects such as education, respiratory support, or physiotherapy. Special information packages are available for medical professionals. Conferences, webcasts and meetings are organized yearly with more than 4.000 partcipants every year.